I have read lots of reference to the team. I have the following two part question. Who do you claim as part of your medical hepatitis C treatment team? Who do you think should be on a Hepatitis C treatment team?
When I refer to team it includes the hepatologist, the PA, and my GP. There is ongoing communication between them and they are all part of the same healthcare system and all have played a part during my tx. In my case, early on I would have had to include my dermatologist who dx my PCT which lead to the HCV dx. I also include the case manager assigned to me by my insurance co. (just spoke to her this morning). I've been very fortunate that there has been open communication on all levels during my tx.
my hep c team consists of gi doc who heads the team, my infectious disease dr and her NP, their nutritionist for tx diets, the social worker for the dept, who handles patient assistance for meds the RNS and my gp who keeps all my records. they handle everything.
Here is another interesting suggestion as who should be on a HCV team. I personally had no team. I just had one doctor. You can find an interesting take on this at " Medhelp1145973" web search. "Medical Schools" is the heading.
"Who do you claim as part of your medical hepatitis C treatment team?"
I wish I could say my ID doc but he didn't even know about using rescue meds until I brought him studies. When I was treating I was under the care of a rheuma, derma, ID doc, and Psych who I guess would constitute a "team" however the vast majority of treatment decisions came from ideas I brought to them from this forum.
"Who do you think should be on a Hepatitis C treatment team"
I guess in a perfect world it would be nice to have just one doc experienced in the complex areas that treatment tends to arouse. Although my "team" shared notes frequently, I still had to follow up with each one idividual which became quite tedious and exhausting at times.
In retrospect...I would have treated at Keck Medical Center of USC with one of there many experienced Hepatologists.
My team is my gi, np., primary care dr., eye dr., dentist, oral surgeon, CIGNA nurse and speciality pharmacy person. They all work together which is nice. Everyone gets copies of my labs except the speciality pharmacy folks who I rely on to contact me each month to set-up my shipment.
Hmmm...I didn't have a "Medical Team"..it seemed like the opposite: Once
I began Tx with my Tx Doc (who specializes specifically in treating Hep C patients at a small clinic), my Primary Care Physicians office almost seemed to disownme, although I have been going there,since my first pregnancy,at age 21 yrs (30 yrs I have been going there, for my monthyly physical, etc).
It is strange...but they dont even send me a reminder for my yrly physical, like they used to do, so I didn't have one last July (but yes, I am scheduling one for this month!)
I think this is kind of strange, this "disconnect" I speak of, because I live in a fairly small community, so my PCP"s child goes to the same school as my child does, and we see each-other at school events, etc.
My PCP's only referal for me, once she noticed my AST/ALT so elevated, and platelets had slid below normal range,( which she failed to even mention to me????) was to the same Gastro they had always sent me to, and he told me he was no longer Treating Heppers. So I came up with the small Hep C clinic, located 2 blocks downthe st from my PCP, but they were very resistant to give me a referal there,as they "had never even heard of it"
It almost seemed as if I was their first symptomatic Hep C patient,
because the Drs and P.A at their office knew so little about Hep C, and never once collaborated with my Tx Dr!
When my Tx Dr went outof town for a convention, I got a Riba-Rash, and went to my PCP, for a perscription for Hydroxyzine, a simple anti-itch pill:
After examining me, my Dr concluded that I was "allergic to one of the 3 meds I was on, so I would have to figure out which one, and discontinue it" Wut??!
For me the team meant my Stanford hepatologist, his office assistant, his on-call backup team, and my PCP. My hepatologist was alone in 90% of the job of treating me, but his office assistant helped with education, contacts, and insurance approval. The on-call hepatologist helped by evaluating my situation over the phone when the nausea made it impossible to keep the incivek down (on a long weekend of course), and he phoned in a new Rx for Zofran. My PCP was involved in tx all along in that she was in frequent contact with my hepatologist, helped determine which of my meds had to be changed or discontinued prior to tx, and helped with sx, including referring me to a dermatologist and prescribing additional meds to help with other sx.
Other people involved were the specialty pharmacy, which offered educational help but I didn't need it because it was redundant, and the Stanford laboratories, which did my blood and had the results online for me amazingly fast, but I don't think of either of those as parts of the team because they weren't involved in a very personal way. My husband perhaps should be considered part of the team, and a pretty big part actually. He drove me everywhere when I was too sick to manage it safely, he helped with shopping, did much of the food prep, reminded me of my pills, sympathized and supported me throughout. He is my hero!
When I did tx I had my hepatologist, his nurse and a hepatic nurse practitioner as my team. I had regular labs, weekly at first, monthly visits with either the doc or np and could phone or email my doctor or nurse for emergencies. They had a required class one has to take before beginning tx.
My spouse was my number one support helping me through daily life.
Every case is different and therefore everyone has a different definition as to what their team is. Since the hubby is military his is a bit different. He has his PCM on base that he sees monthly, an assigned Case manager (Patient Advocate), the local hematologist (another godsend!), and his treating hepatologist/nurse from the nearest medical hospital/college. He is also seeing a counselor to help him deal with the "mental" side of things as well. One portion that is NOT apart of this whole fiasco is the local hospital. They failed to notify us of his diagnosis when he went to the ER for vomiting blood. (We have had several bad experiences as has a lot of the local military community and they damn near damaged his career because of their "stereotyping" against his military service). Fortunately he hasn't had any rashes from the Incivek *knocks on wood* otherwise I'm sure a dermatologist would be in there (2 weeks left of that stuff!)
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